Patient Story

Vivian shares her story of hope

I am Vivian de Klerk, a South African Defence Force employee, and have been in remission for almost 11 years.

Last updated: 09/09/2021

I was diagnosed with PNH at the age of 23 years. PNH is a genetic disease. It took a while to get a diagnosis and came as shock when I heard the doctor tell me that there was no cure for PNH except for a stem cell transplant – I was placed on the waiting list for a transplant for almost three years.

During this time, I was dependent on regular blood transfusions to keep me alive. I sometimes felt negative as being ill left me with minimal energy and unable to actively be part of the search for a suitable donor.

When my three brothers tested negative and there was no matching donor on the South African database, I had to dig deep to not lose hope. Luckily, I had family, friends and The Sunflower Fund partnered by DKMS to support me during the years of waiting.

When I finally received the life-changing call that there was a matching donor in Germany, that changed everything.

The transplant itself is like getting a blood transfusion. The donor’s stem cells are processed similarly to a blood transfusion and it was not painful at all.

Before the transplant, I had to get chemotherapy to eradicate my own unhealthy bone marrow. I was then discharged from hospital a few days after the transplant and has been healthy ever since.

If it wasn’t for my donor, I would probably not be alive today. To have a strong donor community allows more people to live a healthy life after being diagnosed.

Soon after the transplant, I began to recover and was able to start exercising, completing the Fish River Canyon hike a year later.

In 2014, I took part in the South African Transplant Games in Cape Town. In 2015, I went as far as to compete in the World Transplant Games twice and took home several medals for various sports. I was also part of the South African team that travelled to Argentina and went to Spain in 2017. I medaled for cycling, javelin, ball throw, long jump and relay and obtained Senior Protea Colours in Transplant Sports.

My “normal” life soon turned into a great adventure. All thanks to my life-saving stem cell transplant.

Because of our diverse and unique genetic make-up, we need more South Africans to register as stem cell donors. You might just be the match that someone is waiting for. Hope begins with you!


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